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New to boards/Neck pain which is getting worse

AnonymousUserAAnonymousUser Posts: 49,671
edited 06/11/2012 - 8:35 AM in Neck Pain: Cervical
Hello, I am new to the boards but I do know how taking things out can help people with difficult decisions.

To make a long story short I had a leaky disc about 10-11 years ago that caused severe pain as well as back pain. I would walk down the hall and literally collapse from pain. My ortho and nero said I had DDD with bulging discs in c5-c6 and I think S1-L1 - need to check. My nero was retiring but told me when the pain got to where I could no longer stand it call and he would operate, all other options had been no good. Two weeks later it was done. Excruciating pain was gone but I still had "some" pain and I eventually went back to work. Oh and yea, my nero retired. Back pain came back and I saw a new nero who looked at MRIs/CTs and agreed I should be in pain based on what was on the images. However h e looked at me funny then left the room and came back and asked me which leg was hurting. He said he did not doubt me, but that the other leg should be hurting based on the MRI. He said to try everything as he would not due surgery until I could no longer bear it as well and at that point it would probably be exploratory and he would simply fix what he found if he could. NOPE!

After 16 GPs,PTs and NPs with some telling me everyone has pain, I just have to learn to live with it (I was told by a friend of mine in the waiting room, that he heard me loose my religion with that doc).I finally went to a GP who looked at everything and she said there was literally nothing she could do, I almost croaked then and there. But she said all I can is send you to the Pain Center and let them see what they can do for you. What she meant was she was not going to send me to physical therapy again since it was obvious it has never worked.

Bottom line the PM came in and said they were not treating my pain right and he thought it was facet joints. So I started every 3 months alternating shots in my back and my neck. They were a GOD SEND! I seldom have back pain, but since I am on pain meds and muscle relaxers probably do, just can't tell. However my neck has always given me fits.

I am basically a computer programmer and have been for over 20 years at my present job (where it all began as well). But recently the pain is getting to be unbearable. I can no longer work at someone elses computer as my neck will start to spasm in literally 2 minutes. Which kills me as I normally have to sit with people to train them. I can't look up without severe pain or starting my neck to spasm and I can't carry anything heavier than a milk jug and opening doors is a major challenge if they are heavy as I have lost strength and grip in my arms. I have carpal tunnel and have always had pain in the left side of my neck and now is going down my arm and some stinging in my fingers. Oh, and I can't forget the headaches and difficulty concentrating. Even though I am highly regarded at work and get constant company awards almost monthly, I am starting to show signs of not being able to complete assignments in a timely manner as I am slowing down due to my pain. Which is really sad because I can still out perform most of my co-workers. probably because I have always refused to let this pain be a hindrance to my working.

Dang..Maybe I type too much? :)

Anyway a friend of mine called me the other night and wanted to do some stuff and as usual told him maybe the next night as I really was hurting that night, which BTW him and his wife are very supportive. He knocked some since into me as I told him I had already called my PM and setup an apointment for next week and that the nurse told me the doc may want me to have an MRI as the last one she was showing was 1999! Yep.. That long ago. He quickly snapped and asked me why I was going through having shots every 3 months, risking further damage by working and being fired or let go and end up with no insurance when I have STD/LTD and I have purchased additional which will pay my salary and provide insurance and money for my meds until I am 65 if need be.

That was already nagging at me, but I have never wanted to be considered someone who was just on disability. We know what people who have never had back pain can say about that.

So after this long novel the real point is that when I see my PM or rather the NP next week, I am not going to mix words. The pain I have been having is getting worse it's not going to get better and I will no doubt start missing work due it in the coming weeks. That is a fact.

Oh dang.. Forgot to mention I have also recently been diagnosed with sleep apnea about two years ago. I use a CPAP machine which shows proper usage but I still wake up dead tired and it's getting worse. The other day on the way to work I almost ran a red light and only my anti-lock brakes and no traffic prevented someone from getting hurt. I am tired all of the time and am on provigil to try and help with concentration and staying awake. Obviously that is not going very well. I have insomnia and generally lay in bed and can't sleep. Sometimes I will be thinking about the things I am behind on at work and how I am going try and "talk" my way out of it.

Every time I get my pain shots my DM talks to me and asks me if we are still doing the right thing. I am not giving up, but I think it is time I come clean and tell him how I feel. I am 46 years old and have been doing this for 10 years, I am getting worse and there is no way I can maintain this till I am 65.. No way. This PM is the best in town, and has several medical awards. He will defiantly listen I have no problems there.

Oh.. well.. I can talk about my restricted esophagus, hiatal hernia, GERD and acid reflux and difficulty swallowing later. I go next month to talk to my MD about my esophagus. He took an xray during my last biopsy and dilation. Not sure why, but I am curious to find out if he perhaps suspects an issue with my neck. Post procedure notes don't mention it...


  • Just wanted to comment about your work. I to just went on std and took a long time for me to swallow that big hunk of pride but i did finally choke it down and decide im done. My neck and arms and shoulders are horrible and now i have tingling in my lower spine causing muscle spasms in my back and shoulders which makes the pain worse in my arms and neck. Anywho my husband also had to stop working with a bad back, neck and ulcerative colitis. He got his ssdi in 3 months and started drawing at the 5 month mark which is required here. Im tired to mostly from 2pm on in the day and cant figure out why. woke up this morning with double vision for about ten minutes man made me sick. well hope you feel better and dont feel bad or worry about what other people think about you drawing your std they dont feel what you do so they have no right to judge you. I dont worry about it and neither does my husband its our dr's decision whether we work or not. If they talk about it then evidently they dont have a very interesting life if they have to worry about other people. Its about your health and what you can and cant do. You know what you need to do so im sure you will make the right choice to be off or not and it is all depending on whether you can do the work. Good luck with everything.
  • @LadyBug

    I sent you a PM. As for the difficulty swallowing, that is not really new. I have had that most of my life. In fact I have never been able to swallow a simple Sudefed(sp) pill. I either crush or I have my Docs prescribe liquid meds. I chew my pain meds and take other meds by stirring up in apple sauce. I saw my GP this week and joked around with her some about it about how far technology has come. In older days someone probably would have died from that complication alone. I no longer eat at Taco bell after choking several times in their restaurant. When younger in my twenties I always ate to fast now I eat slowly and if I go out to lunch it generally takes me twice as long to eat (hmm.. make note to tell this to docs as well. Quality of life issue). My friends are understanding, but I generally end up not eating much when I go out as I feel rushed, so I eat before I go and end up throwing most away.


    Not to worried now about what people think. But I have in the past worried about being labeled a quitter. I drove my ex-wife crazy as I always took a shower and went ballistic if my clothes did not fit right, she would laugh and say your married - who are you trying to impress?:) But that is the point I was making, is I finally had to swallow my own pride.

    One thing I did not mention is I have been taking online classes to get my degree which is being pressured on me by my company, no degree no more promotions. I have trouble reading or holding books due to my arm strength and pain. I currently hold a 4.0 average and on the Deans list and have finished my AAB degree and about half way through my SE degree. I am sure that will go against me, but I have gotten by because i know the information and do not need to read. But I just dropped a calculus class after I realized I can't write the math formulas or concentrate long enough to pass the course. this class will be my last and no, I will not be reading the book in it either.

    I really, really, really want to open my own business and was making plans for that. But I also had to realize that if I can't talk to co-workers without causing neck pain, then working with customers is not going to be much different.
  • I too have pain/numbness in my opposite leg of my herniated disc and was told that if Drs Neuro and Ortho don't understand they are reluctant to operate because they don't understand it. I'm going for my 3rd opinion NeuroSurgeon in Oct, and will ask for a discogram if he refuses to do surgery. After being so long in pain I can't understand why I can't have microdisectomy. I have facet joint problems also with the herniation and have pain on the opposite side of the herniated disc. I gave up on the facet joint injections as they hurt too much and the PM Dr dosen't do nerve burning. Maybe that would help the pain and I'm going to ask for a referral to that pain clinic at the hospital where the NeuroSurgeon is if they can't do surgery. I'm on LTD from work but lose my job in February if I'm not better by then. The Insurance company is already talking about retraining for a less paying job they,not my Dr who thinks I may not be able to go back to work again ever. I can barely function on meds and never go out I hardly think I'll be able to work at a desk as they're proposing. It's soon time to get a lawyer after my referal to the NeuroSurgeon. Anyways enough about me I hope you can find more pain relief and keep looking for another Spine Specialist that will work with you. Take care. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN

  • This entire post was deleted. It was totally inappropriate to be publically posted. In the future, if you have such disregard for the medical institutes, then you should take it up directly with the people you have problems with.
    In the meantime posts like yours will NOT be permitted on this site.

    Ron DiLauro, Spine-Health Administrator 09/04/09
  • You may have come to the right place!

    In my humble view your computer career is over-the body is telling you NO MORE!!!

    Speak to anybody in the medical, physio and associated areas and they will all tell you of the damage that intense computer/ games use will cause.

    Arms, neck, shoulders, back and head-all get very painful from overuse and lack of good care.

    In my case I had 43 years of office work, the last 20 or so being heavily computer orientated.
    In the end, I was down to about 10 minutes of useful work a day.
    Luckily I took early retirement.

    After about 5 years of so-so pain management I was finally directed towards effective treatment.

    Basically, it involves weekly remedial massage to get the back and neck muscles sorted out.
    Surprisingly, the main culprits are the back muscles, that pull down the neck ones.
    This has been going for about 3 months now with huge success. Pain almost entirely gone.
    I had awful head and neckaches, locked neck, poor sleep etc. Bad pain would last 2-3 days before easing. Pain meds made almost no difference.
    I'm now extending to fortnightly massages, and I still get sore if i do anything, but at least the pain is under control.
    Your entire muscle system will be in a worse mess, I bet.
    Get yourself to a qualified remedial massager and see the difference in just a few visits.
    Bear in mind though that you will need months of treatment.
    A body that bad won't be fixed quickly.
  • @Peter,

    Yes I have had a message but my PT refused to do my neck. Mainly dues to the arteries from what I remember, I have had a few messages like when I get a hair cur - I know not professionals but comes with the hair cut and I had to tell them to stop. Ok to do in my shoulders bottom of my neck, put in middle of my neck I can't stand it. I generally end up with what I call deferred pain., having major pain a few hours later.

    But I agree. Will take months to get me back.


    Yes, on the nero the way he presented not knowing what to do was actually re-assuring for me. I could tell he was actually honest and caring and he was asking questions and then verifying against xrays and MRIs...

    Take care.. Oh would I love to fish again.. Only problem is I had to sell my boat years ago because my back pain killed me standing up in it. I mainly BASS fish as I am allergic to fish.. catch and release only:)


    Hate to hear that. Hopefully everything will work out. Hopefully the docs are just being cautious, but I have started to learn I have to educate myself and ask questions, sounds like that is what you are doing. Make them tell you what a plan of action would be. Before my surgery I was given a plan, PT, rest, meds and then surgery as a last resort if no response in X months. Believe me working behind a desk will kill you back especially if the company does not provide ergonomic chairs or will provide the ability to adjust your desk height. If they do require you to take a job, those are considered reasonable requests under the ADA act but if you have to get a lawyer make sure they understand that aspect as well.

    I have seen that posted a lot about people losing their job if not better by a certain date? Is that something specific to the type LTD you have or your state or is that something I need to look closer in. From my reading of my LTD it states I would be covered till I was 65. But I am trying to get the "fine print" to see what the finer details actually say.
  • We do not CENSOR.

    If anyone wants to read up on any of the information you provide, that is certainly their perogative. This website has a home page that is filled with medical information that is written by physicians and peer reviewed.

    We do not allow links to other websites here. We do not recommend POSTING your own email address. If anyone wants to email a member, they are free to send that member a Private MEssage and request it from that member. For some reason, websites such as this attract a good bit of wierdos, and we would just rather they not have access to our members' personal contact info. We are just concerned for the well-being of our members.

    Please, if you have not done so, READ THE FORUM RULES. Would you go to someone's house and cause trouble? If they asked you to stop doing something, would you keep jabbing them like this?

    All we are asking is that you follow the rules that the system administrators have devised. If you don't like them, there are other websites where you may feel more at home or more comfortable.
  • The massage that you need is called remedial massage, and is not available at the hairdressers or other casual places.
    It is serious fully qualified and trained massage.
    The aim is to find the cause of the problem and then work to fix it.
    They don't need to touch your neck initially if it is so bad.
    In my case, ALL of my neck pain was caused by the back and shoulder muscles. Once they were treated, the neck pain stopped.
    I know there is a tendency to think we have a more serious problem than we have, and in doing so we eliminate the simple ones.
    There is no way that your muscles would not be in a very bad way given the work you do.
    Try the remedial massage first-no drugs, no surgery, no waiting-just immediate relief.
  • Yes, I understand the difference in remedial message and others, was trying to point out how sensitive my neck is, which is not muscle related. I had someone at work squeeze my shoulder from behind and the pain dropped me to the floor. I have had several months of remedial message and PT with no success. While working to have any effect I would have to have a remedial message every night and I can't afford that.

    Everyone is different and your neck pain seems to go down you back into your shoulders which indicates muscle. Mine very seldom goes into my middle back except recently. Generally the pain can be described like someone sticking a knife in the middle of your neck.

    I don't think my pain is quite as simple as you may think.
  • Having run several boards I understand the work of moderators:)

    And I have to agree.. No one should post their email on any sites. And for me will be closing down my FaceBook and other online activities as to keep anyone from seeing the info.
  • Hi, last nite I read good information from, burtonreport pages, very informative. I advice to read to understend why pain returns.
  • I'm considering filing for LTD and SSD too. My company's LTD has a 6 month waiting period, then you are covered to 65 like you were saying yours was. It's only 30% of your pay. We also have a disability retirement that's 35% of your pay. So I would draw 65% if I make it through the process and get approved.

    I'm a computer programmer and the team lead for a small group. During my 25 year career in computers, I've toted desktops, printers, monitors doing desktop support when I was younger. I've also tried to be active outside gardening, driving tractors, cutting wood, a real tomgirl. I've been off work since the middle of June this time, although I have worked from home part time or just to do timesheets. My neck has been really painful for a while, but my lumbar was worse. Seemed like after I had the two back fusion surgeries, my neck flared up even more. Now, after two neck fusions, I'm still having deep shoulder and arm pain and joy, joy, my low back feels like I have a rock in it. It's like if you get one thing resolved, layers of pain peel off to the next thing for me but the resolved piece still lingers around at an ache or better.

    I thought that surgery was the way to go to "fix" my spine problems and it's helped, but I still have pain and muscular problems. I know I can't continue in my programming career even with the best ergonomic setup and perform what we have to do. We support a Nuc Plant and it's stressful, fast paced, and very demanding.

    Good luck with your decision. I've gotten the LTD paperwork and am holding it to call in and ask questions until I'm more healed from my last ACDF C4-6 that was on 08/24 this year. I guess I'm hoping for a miraculous pain free recovery. :)
  • Good luck Candle99. I am trying to find paperwork now to find those type of things. I haven't seen the 30% drop at least it is not mentioned in the overviews, that is a pretty big drop to leave out. I am hoping mine isn't, but then again at this point not much I can do about it or even care. At least it would be something.

    Yea, I can no longer lift computers, monitors ect. In fact most my managers joke if they see me even scooting a monitor to stop before I end up suing them:) Some do understand but others do not.

    I am the same way decided to stay off my home computer today as much as possible while over the holidays and do some cleaning. Did not take long to get that back hurting and neck hurting as well. Double whammy but at least it gives me more of an idea what to tell the Doc as to what aggrivates my back. Which has not given me problems lately.
  • Can I ever relate to what you are describing, and your issues with the c spine. I , too..worked on a computer for about 20 years daily..am not working now, but looking for work and dismayed to see that there are many, many jobs that I cannot do...I suffer from many of the symptoms you have described. People suggest that I take a class to learn a computer program, but I cannot sit at computers that are not set up for me properly without almost instant pain and dizziness...my computer at home is not set up properly either. My doc said I need to buy a standing desk and stand to work..guess it is so the arms and neck won't go forward as they tend to do while seated, despite my best efforts.

    I am currently in PT, but do not let him touch my neck. We are trying to strengthen the cervical muscles ..and I am using weight machines to help me there. He is also using ultrasound on my thoracic and lumbar spine in an attempt to help the c spine. But I am still dizzy..It is extraordinarily frightening and has restricted my once tremendously independent life is so many ways. I have to lie down quite often during the day..when I go out to do errands, my stamina is negligble. My doc says I should be cleaning only very seldom and with great caution. While cooking, I cannot even lift a pan.

    I've been told that the surgery that might "fix" my issues is considered to be a "major, major" procedure, so I am disinclined to take that approach,particulary after reading these posts and seeing how much people suffer after their surgeries.

    Since I am not employed now, and was a 1099 contractor for a while, there is no disability insurance for me but it has been suggested that I apply for SSDI. I have been SO despondent over all of this the past few weeks..Can't get motivated to do anything as it all seems so hopeless.
  • I actually saw my company doc years ago when I had my C5-C6, but due to neglect which almost killed me, which I won't go into on this board, I went back to my regular doctor.

    One thing one of that his PT's did do for me is she told me my problem was my neck muscles were so tight the exercises were not helping me. Not sure what the procedure is called, but as a last resort she had me lay down with my head hanging over the end of a table in her hands. You have to really trust your PT for this:) But she moved my head through a short series of range of motions as I simply sat relaxed. I was amazed at my range of motion.

    How she explained it to me was my muscles were so tight, I could not move my head through the range of motion exercises enough to make a difference. The pain set in before I could move any further. However, by her moving my head there was no muscle movement on my part. And I felt so much better and was probably the best treatment I have ever had. Problem is besides leaving that Doc, I could never find her again, or any other PT who knew what it was called or how to do it. But it made a difference.

    Again, may not be for everyone either, but would not hurt to ask.

    Hope things work out. Yes.. Cooking is something I can't do well as well.

    So refresh me.. Did you have a fusion?
  • Looks like a MRI tomorrow W/WO contrast for DDD/Cervical Radiculopathy. Will see what the next few days bring.
  • Hello all! I, too, am new here & I guess just looking for some opinions.
    I wish my doc had been reluctant to do my neck surgery. I've endured DDD since I was 17 (now 33). 4 yrs. ago the pain had become much worse & an MRI showed that it was bcuz the discs were pushing on my spinal cord. Doc said we had to do surgery right away or I could become paralyzed. Did the surgery the next week. C4 - C6 with plate & 6 screws. I am in more pain now than I have ever been. A new CT shows that C3 & 4 need to be done (they needed to be done when he did the surgery & I do not know why he didn't include them) & there are bone spurs (osteophytes that were also there at the time of surgery that still need to be removed). And, severe carpal tunnel. Problem is, I have no insurance & have been laid off from work. One Pain Dr. said I had only 2 choices left: A) Learn how to live with the pain or B) Take pain meds for the rest of my life. Well, without ins., I'm trying to learn how to live with it but I don't know how much more I can take. I was told years ago I should be on disability (to which I laughed, bcuz I know I wouldn't make what I was currently making), now I am considering trying to get on it. It's better than what I'm making now (nothing) & if I'm honest with myself, I know I can't "perform" anywhere near the way someone my age should. I don't even know how to go about getting on disability. But, I do know that there are people who only have Fibromyalgia (as do I) & are on dis. simply for that; so shouldn't I, with all of my current ailments be able to take part with no problem also? On top of everything, I am suffering quite badly with insomnia & can't remember my last good nights' sleep. Sometimes, I don't sleep at all. I just want to feel like I'm ALMOST 33 yrs. old instead of feeling 60 as I do almost everyday. I'm so depressed & tired & worn out from feeling like this on a daily basis. I truly need help!! =)
  • (Hey! I didn't put those smileys there!) =)
  • LadyBug, I was talking yo my masseuse yesterday about sore neck muscles, and what causes them.
    She said it is always the back muscles. They get tight and pull down on the neck muscles.
    She also said that the neck muscles are never massaged, as there is nothing to be obtained.

    It is the back ones that need to be sorted out.

    I started massage therapy in April, and we are now starting to see really positive and lasting results.

    So it has taken 4-5 months to get my hard muscles soft enough to be worked on properly.

    I can now do a bit of work and not get the sore neck and headaches, with a fortnightly massage.

    It has taken twice as long as the pain doctor estimated, but they keep it short to make it sound encouraging. In any case, he put me onto the right treatment, away from the facet injections I was having.
    I'm so lucky that my injections doctor retired and I found this new one with a much more enlightened and educated approach.
  • Hey Lady Bug... Got the results today looks like C3-C4 have dried up on me. PM Doc or rather the RN says facet injections and trying to swap my medication around on me.

    Think it's time to talk to my regular doc again. Can't put up with this.

  • You should look for a lawyer who handles disability. I'm not sure how they get paid but I'm sure you could get a free consult. Make sure that this is their specialty.

    Peter I am beginning to agree with you. I have been going to PT for massages on my neck for about 2 months now. It feels great for an hour or so and then it's back to the same.

    I have been on meds to relax muscles and nerves. I still feel pain but I think that may be the underlying disc problems coming through when everything does relax. Wonder what I will have to take to get rid of that???

    I am going to ask my neuro about massage. He wants me to go to his PT so he can direct treatment. I think it may be worth the drive.
  • Wow... Totally shocking!

    Last light I was up very, very late. Could not sleep my neck was hurting so bad, very sharp pains. I laid in bed for probably 30 minutes or so and thinking how can I sleep with all of this pain and was about to get up and do something (as suggested by my sleep doc). When I realized, I could move my neck and it was actually no longer hurting!

    No doubt something moved back were it was supposed to be. Still have other problems/pain, but for now... That has subsided at least down to simply a stiff neck and higher than moderate pain.

  • I've noticed this a few times too. Feels like something is just out of place, lasts for days, then suddenly stops.
    It's not muscular, being a totally different pain.
    Like crossed wires. Maybe spurs snagging something.
  • It turns out that I was not having ultrasound on my back as I thought, but the PT would work manually on the lumbar and thoracic area for a while and then use some sort of massaging/oscillating device on my back to help loosen up the muscles and the tissues, thus helping the neck. One day, he used the device on my lower right lumbar area, and I could feel the vibrations at the left side of my c spine..Amazing.. He said that I was very deconditioned and boy, did it feel that way..I was exhausted after each session. That, along with certain light weight lifting excercises using machines, has given me some relief. My cervical muscles are much stronger, so I am not aware of the dizziness as much. That was the most disconcerting and frightening part of this entire situation.

    So, I guess I'll just keep taking it all day by day and hoping to find some work that won't require much computer usage, and/or file for SSDI which I've been advised to do...

    Since I have felt a bit better, I know that I overdo some things and have to be cautious. I really want to have the use of my body, including those all important hands and arms (!) for years to come...I couldn't even lift a pan before I went to PT and now those muscles are stronger and I can do it...I still practically unpack my groceries downstairs and carry only the lightest bags upstairs..

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